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Monday, June 13, 2011

The Walker's Oath

I forgot to wear red to Church today. It was Pentecost Sunday; a Sunday 50 days after Easter, when 120 Disciples gathered and were filled with the fiery power of the Holy Spirit. In honor of that flame, we wear red on this Sunday. I could blame my lack of recall on the very busy week I have had. It was truly Health Innovation Week DC and every day was filled with activity. And during most of that week I wore red. I wore a red jacket to be precise. I wore my Walker’s jacket: Little Miss A-type Personality. Perhaps, I forgot to wear red, because I had already been celebrating the power of the spirit within us.

You see on Tuesday night something holy happened at the Kaiser Permanente Center for Total Health. A space that is a shrine to technology and the power of electronic communication became a Gallery and the art walked. Over 50 people walked around that space wearing patient stories on their backs. They came to get their jackets and tell their tale, but I saw something amazing happen. They became their story. I saw Doctors throw aside being defined by their profession. I saw administrators and government employees drop their distancing titles and simply be the patient that they are. I saw teachers talk with CEO’s and artists meet programmers, and all were connected through their stories.

Time and time again, Walkers would come to me and ask me how did I know? How did I know elements of their story that they had not told me? How did I know their personal struggle to balance advocacy and the demands of their life? How did I know the exact scene that Near Miss Mom suffered through as she almost bled to Death after childbirth? How did I paint her so realistically without ever seeing her? Why was I determined to paint Susannah Fox surrounded by Japanese screens? I have never seen her office. I had no idea she daily sifts data in a room decorated with Japanese screens.

In every blog post and tweet I have read about the impressions of the Walking Gallery, I hear the same things again and again. It was electric, passionate, fiery and so very filled with positive energy. We were filled with the spirit of change. For many years we were a small group of disciples following a few leaders. But The Walking Gallery was a day we became a movement. We now will walk and spread the message.

I came away so inspired I painted another Jacket, this is Oath of Office.

In this painting, I am wearing my red jacket, but now I am swearing an oath. I hold up my right hand. This hand is entwined with a USB cord. That cord loops down around my arm into a smart phone that says, “EMR Data Access.” My left hand is placed upon the Bible of Fred’s medical care. This is the binder of data that I fought so hard for. This is the binder I carried with me everywhere for two months. This is the binder that helped extend Fred’s life. Here I swear to walk the walk as member of the Walking Gallery.

What is the Walker’s Oath?

I have told you before how I tried to get Fred’s medical record at the same time as I tried to get a copy of an unpublished Stephen King Book. I ended up getting Stephen King’s book: Under The Dome. Fred was so happy. But there was another book that Fred also wanted. That was the newest book by George R. R. Martin in Song of Fire and Ice series. I was unable to get that. Two years after Fred’s death it is finally being printed. Fred loved those books and he was very taken with the Oath of a Member of the Night’s Watch within the book. Their oath was:

Night gathers, and now my watch begins. It shall not end until my death. I shall take no wife, hold no lands, father no children. I shall wear no crowns and win no glory. I shall live and die at my post. I am the sword in the darkness. I am the watcher on the walls. I am the fire that burns against the cold, the light that brings the dawn, the horn that wakes the sleepers, the shield that guards the realms of men. I pledge my life and honor to the Night's Watch, for this night and all the nights to come. Game of Thrones, George R.R. Martin.

So, shall we be inspired by that quote? Or perhaps we shall walk inspired by the words Paul in Frank Herbert’s Dune? “I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”

Or perhaps we will walk inspired by the words of the Cub Scout Promise said by every Cub Scout I work with,

“I, Regina Holliday, promise to do my best, To do my duty to God and my country, To help other people, and To obey the Law of the Pack.”

I think those oaths sum up a lot of the power and duty of a Walker from the Walking Gallery. But feel free to say whatever oath comes to your mind, as you swear to wear this jacket from this day forward, as you swear to take a tragedy and turn it into a thing of beauty. Sometimes there are things that happen in this life that are great and tragic. Sometimes we carry those events on our back for the rest of our lives. And sometimes they bring us closer to God and to a greater communion with all of humanity. I want to thank the brave ones who Walk the Walk with Me.

I know I shall be honored to wear my jacket and tell our story, for this night and all nights to come as a member of The Walking Gallery.

2 comments:

....I saw teachers talk with CEO’s and artists meet programmers, and all were connected through their stories.........We were filled with the spirit of change. For many years we were a small group of disciples following a few leaders. But The Walking Gallery was a day we became a movement. We now will walk and spread the message.....

Thanks Regina for communicating to all those who have not attended the Spirit of The Walking Gallery. In the Greek Orthodox Church, after the Pentecost Sunday, we celebrate today the Holy Spirit Day. Is that a coincidence that you posted today?

My oath is to tell my jacket's story to all who ask and to tell it to at least one person who *didn't* ask.

I'd estimate that 10 people asked me about my jacket at the Health Data Initiative event at the National Institutes of Health last week. It was a wonderful way to meet new people and to spark new conversations.

When I ran into Tim O'Reilly in the hallway I asked if I could tell him the story. We talked about data sharing and de-anonymization, in health care and other sectors, including his contrarian view of FB's face recognition strategy: http://radar.oreilly.com/m/2011/06/facebook-face-recognition.html

Alex Drane, who was part of the conversation, described how Fred used Facebook to log his symptoms. She told about your observation, Regina, that if his status updates were incorporated as part of a medical record, his cancer may have been recognized earlier.

I was very happy that I had picked up one of the bookmark-size slips of paper with your contact information & jacket QR code on it. I handed it to Tim and realized that I should have more of those - my jacket needs its own business cards!

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."